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I have been referred to as a case of 'allergy induced autism' however I believe my allergies and intolerance's were part of having two untreated immune deficiencies and the impact of an untreated co-morbid mood, anxiety and compulsive disorder on progressively impaired gut and immune function with progressive toxicity effects. When this stuff happens in infancy, normal brain chemistry, normal development of neurological integration, and normal information processing become pretty unlikely. There are others in my family diagnosed with Dyslexia, Bipolar, Anxiety disorders as well as a very strong history of Coeliac and Colitis and two people with Crohns. There is at least one other with an auditory processing delay, two diagnosed with Aspergers and one other diagnosed with Autism who also has Tourette's tics. So, gut and immune challenges are PART of my package but clearly there's many other things going on that contributed to my autism.
Nobody Nowhere was written in 1990 and came out in 1992. It was an international number one bestseller, with over 10 weeks at number one on the New York Times Bestseller List and today published in over 17 languages throughout the world. It was the second published book by a person diagnosed with Autism but was the first one to reach the mainstream public (Temple's book was in academic/educational field rather than sold in mainstream bookshops), hence it popularised autism and exploded lots of the existing stereotypes, contributing to big changes in diagnosis and treatment, including some of the increased diagnosis of those who'd normally have been outside of the stereotypes.
It covered the loss of my main carers are gone when my grandfather died and my grandmother was sent away. Now, left in a wild, violent, obsessive and alcoholic atmosphere the seemingly deaf, somewhat 'psychotic' and disturbed I is put on course with the goal of transforming meinto a pretty and perfect dancing doll. But inside of me there were other people I had collected along the road to survival; Willie who was like a civil rights activist on steroids and the smiling facade of Carol. Carol played the mother's doll to protect the soul of the real Donna. Intertwined with Willie's violent and defensive outbursts and paranoic protection and my often bizarre and quite Autistic responses and behaviours, Carol, behaved like people on TV sit-coms, went to school,even went through the motions of 'friends', and develops a broad range of mimicked speech, stored phrases and charicatures, saving me from a life in an institution and often from the very real threat of . As the teenage years approached Carol and Willie fought it out for control of the body with the real Donna on the sidelines as the lot of us drifted into homelessness, poverty and domestic prostitution passed from stranger to stranger. After an attempted I fell into the care of a psychiatrist and went on to get a university education. But knowlege is not wisdom and without independence skills, I followed a stranger across the ocean where, on arrival, he abandons me to an itinerant bag-lady existance throughout Europe. This second journey began with a man who would change me life and sense of self forever as I met and fell in love with a real life 'mirror'with the same challenges as my own and, later faced with the loss of this first deep love, went on a desperate and dangerous quest to find out 'what kind of mad' I was in the hope there was hope I could change it and as a result found out I was Autistic; a realisation that ended up changing the entire field of Developmental Disabilities forever.
The book came to be left behind in the UK in a tea chest with my belongings which I intended to have sent over to me later, a copy of it was left with the original child psychiatrist who read it who then passed it on to his mentor, who then passed it on to her publisher, who then passed it on to a literary agent, and from there I got the news it was going to be a bestseller. These people didn't consult me till the end as I had essentially abandoned the manuscript after this psychiatrist read it. I wrote it as an attempt to find hope in order not to . It was never meant for publication. It was a matter of agreeing to the pursuit by others to have it published. I decided the use of it to others was more important than my own humiliation or privacy, especially as I was on the verge of discarding my physical existence through anyway.
I am the child of a dysfunctional family ted by and alcoholism. I was taking myself to the park at age 3 and coming home when it got dark. I had moved into my neighbours house most nights of the week by the age of 8, got myself a foster family at 13 and had left my family permanently by 15. As for the big cruel world, I have never had 'protection' so I do not know its loss. I've known homelessness, which is cold, hungry and at risk. I've known living with men in exchange for somewhere to live. That felt like prostitution, exploitative, confusing. I've lived independantly, in poverty, lack of food, everything burned, constantly flooding my flat, having my utilities constantly turned off and unable to discuss with the authorities how to get them back on, having no sense of money or social safety, abused because my language was so dysfunctional people though I was mad, struggling to understand
I'm a person whose personhood alters the expression of my autism, how I challenge my limitations or embrace them will depend on my own personality makeup and experiences, the Donna-ness. Similarly, the autism has been a classroom that taught me much, philosophically, spiritually, about difference and equality, about resilience, adaptation and the essential basics of a shared humanity with all others with their own collection of differences. My autism often constrained the expression of my Donna-ness, but also taught me that a tree still grows around barbed wire. My limitations now are small, but before were huge. I have an immature nervous system I can only babysit but sometimes I want far more inclusion, have far more passion, than my nervous system can withstand. I have a great desire to connect with people but an auditory and visual processing disorder puts time limits on that, forces me to educate others so we can stay involved.
I think people should always be seen as their personhood as well as their system... the idea that autism is self is like saying that autism IS my personality. Well I'm artistic, vigilant, idiosyncratic, solitary, sensitive, self sacrificing and I'd have been all these personality traits without my autism, my autism merely puts their volume up. And autism is not my entire range of experiences... it was a stranger at a bus stop from whom I picked up an interest to sketch trees, it was the fact I had a green fluorescent ball at age 2 that gives me my fascination for things green and fluoro... not autism. Autism isn't my entire world of experiences and personality, autism doesn't make me smile at the smell of straw or love the feel of patent leather, but being an artist does and being an autistic artist maybe heightens those experiences, but without early straw and patent leather experiences, no amount of autism would have lead me to those parts of my personhood.
If one got to know my autism too much, one would lose the Donna-ness. If one sees only the Donna-ness, similarly, there's the danger the autism and its special requirements are trodden upon, leading to chaos.
He was in an upstairs toilet. I was downstairs in my friends house. He came down and I found I didn't want to run. I instantly wanted him to stay and stay and stay, which was absurd and unheard of for me. It so shocked my friend that she later arranged for him to meet me again.
All countries have their challenges. The Italians have embraced FC wonderfully, helping many non-verbal people to have communication through typing. The French had some great integration programs with autistic children in mainstream where they joined the classes they could and returned to their own unit for other classes. The Japanese struggle more with individuality but work well providing highly structured programs for sensitive people who enjoy those. The Italian's tend to pray and gush a lot which I don't think is good for those with a lot of Exposure Anxiety. The English seem to too blindly follow the American's infatuation with the voyueristic approach of ABA and I think play therapy has incarnated into Floor Time which is good as this is an approach that is user friendly for those with limited auditory/visual processing who have good kinesthetic learning and are good hands-on discovery learners. The Aussies are sometimes pretty innovative in creating individualized programs but culturally they are geared to respect eccentricity and individuality more than some cultures. Those in India and Indonesia are working with very little resources and struggling against much cultural taboo and I think they are being innovative to look at what they can do without buying into expensive US programs.